Tuesday, January 17, 2012

It's Not Really an Emergency

So I had my first trip to the Emergency Room since being diagnosed with Pulmonary Hypertension. Four years with no emergency was a pretty good run.

I woke up very late on Sunday morning, feeling pretty crappy. I kind of dragged myself through the day, using coffee (which I had greatly cut down on) to get me through, especially the part of the day that involved a five year old's birthday party in a giant ware house filled with inflatable jump houses.

I got home from the party and attempted to keep functioning. But at about 4:30 I was standing in the kitchen talking to my husband and suddenly said, "Okay, I'm going to faint. I need to lie down".

Into the bedroom I went, and as per usual when I feel "off", I popped my pulse oximeter on my finger. I expected maybe some unusually low oxygen saturations, or a fast heart beat or something.

Nope. Perfect 02 sats. And a heart rate that was dipping down to the low 50s. Normal range is 60 - 100 for a healthy adult. PHers tend to run high. I run at a solid 70 - 80 at rest. So this was strange. And it would explain the crummy feeling.

I waited it out for a bit while laying down. Feeling pretty rough. I decided to call the on-call doc at my specialist's office. He was not comforting as, "I can not tell if you have a heart blockage from here. Go to the emergency room" Great.

Then I did something I promised myself I would never do unless I had to. I have my PH Specialist's personal phone number because he called me one day from it and I thought, "HEY! That could come in handy!" and I saved it... but I never want to abuse that.

So I did call him on a Sunday night. And he too said to go to the ER. Crap. Crap. Crap.

Our local ER is a scary place. End of story. So my husband and I made the decision to go to the hospital where my specialist is based. It is a bit of a ride, but at least there we had a prayer of someone knowing what to do with a PHer.

Drink your water kids!

When we got there they asked all the right PH related questions during intake, and I remained calm and very very happy we were there and not at the local place. Pokes, prods, pee in a cup, (complete with the walk of shame with the gown open in the back while you balance a bunch of wires hanging off you and, you know, a cup of your own urine) and several hours later, we had a diagnosis: dehydration.


I came out on a Sunday night and spent four hours in the ER because I was thirsty?


And here folks is the part where we take a break and I tell you all once again in no uncertain terms YOU MUST ADVOCATE FOR YOURSELF!!

With a diagnosis of dehydration they naturally wanted to hang a bag of fluids for me. You know, the wet stuff. The stuff I could drink instead. While in the ER I had touched base with my PH nurse (okay, yeah, I have her number too). And she stressed, as she always does, do not let them overload you with fluids! She's right of course, because to do so could very quickly put me into heart faliure. Bad plan.

So, I'm negotiating with the ER doc, trying to explain this to him and promising with gusto that if he discharges me I will indeed go home and hydrate up. He was totally reasonable and great about it and left the room to get the discharge going.

But while we were having the conversation this nurse is fiddling with all my wires and stuff. I'm focused on the doc. She is behind me, as is all the equipment.

They all leave and suddenly my husband says, "Um... what is dripping into you?".

While we were having a conversation about no fluids the stupid nurse WAS ATTACHING THE FLUIDS. I flipped. I stuttered. I sputtered. And then I sent my husband into the hall to go get someone to take that freaking thing off.

A different nurse came in. And she says, in all seriousness.... wait for it... "Oh. Now we've gone and wasted a bag of fluids."

I choked just a little. Then I looked her straight in the eye and said, "Well, given the alternative, it is a risk and sacrifice I am willing to take.".

She responded with, "What, you mean CHF?" (chronic heart faliure)

Yeah, lady. That's what I meant. And congratulations. You've just become a blog post.

Okay, switching gears (sorry, this is a long one)

We left with me more or less in one piece. And while dehydration could explain the low heart rate, I wasn't totally buying it. For some time now, I have been wondering about one of my meds. Digoxin is sometimes given to PH patients for heart support. It keeps a struggling heart rate low. When I was diagnosed my heart was a huge (literally, huge) mess. But all that's been better for some time now and I was kind of hoping I might come off it, if only to be down one med.

In fact, I had a scheduled appointment for Monday where I was going to bring it up. While my blood work from the ER showed I was not suffering from Digoxin toxicity (something easy to slip into, and quite dangerous), the theory goes it may still in fact be contributing to my low heart rate.

Last week I had an echo and a stress test on a bike (tube in the mouth, plugged nose, wires attached everywhere, the works). I'm rambling here. But it's all connected, I promise.

So, appointment on Monday comes. I'm surprised with no six minute walk! YAY! Because truth be told, not only are they a pain in the ass, I was still feeling pretty icky from the ER ordeal and wasn't up to it.

When meeting with my nurse she informed me that I have been doing kind of too well on my six minute walks. They're not showing much. And the exercise test I did on the bike showed way more - so maybe we should just do those for a while. Okay!! :)

What did show up on that bike test is my heart rate maybe didn't get up as high as they would expect for someone with PH exercising, and perhaps the Digoxin is in fact holding me back too much. So no more Digoxin for me.

Echo looks great, my heart maintaining it's previous improvement. And one little note that I hadn't seen before. When your right heart is enlarged it can push on the left side and sort of compress it, and this has been the case for me. Well, that compression of sorts has gone down. I'll take it as a good thing.

Again I say, YAY!

And in closing, just because it's too bizarre not to include for fun, this hot little number is what is currently hanging outside the hospital gift shop.

Now think real hard, in what scenario would this be an appropriate gift to bring someone in the hospital?

I'll leave you to ponder. I need a drink of water.


  1. Colleen:

    I'm sorry you had to go to the ER. Nicole has had the same thing and it is because she's dehydrated. She doesn't take digoxin though. I hope that you are feeling better.

    Yes, I can't think why you would purchase that for someone in the hospital but, hey, to each his own.

    Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
    "If you don't like something change it, if you can't change it, change the way you think about it."

  2. I'm glad you're off of the digoxin! I know you really wanted to get off of it, so YAY!! And I can't even imagine what that lingerie is in the gift shop!! lol

  3. Too funny about the gift shop. So proud of you for being your own advocate you never know you may have just saved your own life and probably definitely saved yourself from feeling even worse. Take care

  4. Hi! I found your blog though a very long and inappropriate google vacation at work. I have htn and had an echocardiogram last year and was diagnosed with Pulmonary htn. My cardiologist (sort of a flake, I am seeing a new one Friday) sent me for a CT and sleep study and it was normal. He said my elevated PH may just be normal for me and sort of left it at that. I am taking two medicines for my htn - one of which is a diuretic. I have no sx's and can easily act like this all never happened. Something is telling me not to... any thoughts? Thank you so much - for being young, for being a mom, for being funny... it makes this all seem more real but less scary.

  5. Tiara, I have lots of thoughts! :) First, the good news. You were not diagnosed with PH yet because an echo is not the way to diagnose. An echo can only give an estimate of pressures. The bad news is the test for diagnosis is a right heart catheter and you don't want the yahoo who is telling you that you already have PH to do that test! Get thee to a PH specialist! Please visit www.phassociation.org for a list of doctors and the most up to date information. And contact me any time. Also - treatment for Pulmonary Hypertension is completely different than standard hypertension and elevated pressures written off as "normal for you" is a big red flag that doc is not well informed.
    ~Colleen (sent from my phone, excuse the rambling... Hard to edit!)